Patient Perceptions of Usefulness of Cancer Genetic Counseling Summary Letters
Capstone Project Committee: Adam Buchanan, MS, CGC, Nancy Callanan, MS, CGC, Sat Gupta, PhD (Statistical Consultant), Tracey Leedom, MS, CGC
Purpose: Assess patients’ perceptions of cancer genetic counseling (CGC) summary letters with respect to: readability, tailoring, letter style and length, perception of value and content, recollection of the genetic counseling session, and understanding of cancer genetics. Methods: Cross-sectional, self-administered survey designed to assess patients’ perceptions of the usefulness of CGC summary letters. Participants were CGC patients seen in 2007 at the Duke Hereditary Cancer Clinic who received a patient summary letter. Introductory letters and a questionnaire were mailed to participants; and three follow up phone calls were made to increase the response rate. Data collection occurred from February-March 2008. Frequencies of responses to survey items were determined using SPSS version 16.0. Results: Participants found summary letters to be easy to read, clearly written, of appropriate style and length, and useful in recalling cancer information and in making important decisions about cancer risk management. Letters were used to communicate cancer information and risks to relatives, and do not cause anxiety. We found that summary letters were not used to communicate with physicians. Conclusions: Cancer genetic counselors at the Duke Hereditary Cancer Clinic should continue to write letters of summary in the current style and format. With respect to contact with physicians, Duke caner genetic counselors should consider sending letters to such physicians and encouraging patients to be more proactive about presenting their letter to their physicians.
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